Overcoming challenges of living with MS
Signs to look out for
People with multiple sclerosis do not demonstrate any symptoms 90 per cent of the time. As explained by Carolyn Armstrong, who has lived with MS for 15 years, there are four forms:
Mrs Armstrong says there is also a list of signs to look out for:
• Bladder and bowel problems;
• Cognitive difficulties;
• Muscle rigidity or stiffness;
• Weakness or poor coordination;
• Numbness and tingling;
• Pain in arms and legs;
• Visual disturbances;
• Memory loss.
Carolyn Armstrong walks with a brace.
Unless you know her well, it’s the only obvious sign that anything’s wrong.
She’s lively, has a sense of humour and radiates good health. She also has multiple sclerosis.
The disease usually strikes people between the ages of 20 and 50. Women are two to three times more likely than men to get it and there’s no known cause.
Mrs Armstrong learnt she had it 15 years ago, after countless visits to various doctors’ offices.
“I have eyesight problems, bladder problems, balance issues and I suffer from fatigue,” she said. “If I get too overheated, too busy or too stressed, I get an exacerbation and I fall down and can’t see.
“Having a sense of humour is very important. I have to always look at the glass being half-full.”
She’s sharing her story in hopes of getting people with the disease and/or their families to join the Multiple Sclerosis Society of Bermuda at a symposium this weekend.
Experts will share what they know about MS. It is hoped the symposium will give a better understanding of how many people on the Island have the disease. The group has 42 members but believes many more residents are affected.
MS attacks the central nervous system, which consists of the brain and spinal cord.
“The brain sends and receives messages and the spinal cord funnels them in and out, to and from different parts of the body through a network of nerves,” Mrs Armstrong said.
“The nerves are surrounded with an insulating sheath called myelin. In patients with MS, malfunctioning T-cells mistakenly attack the insulation and expose bundles of long nerve fibres.
“When any part of this myelin is destroyed, the damage makes it difficult for the brain to transmit messages, thus MS. It’s a bit like when you have a radio cord. The wires of the cord are protected by plastic. [People with MS] get a lesion that eats away at the plastic, exposing the wires and when you go to turn the radio on, the signal comes in and out.
“It’s actually the immune system attacking the protective sheath around the nerves.”
Such lesions can occur in the brain, neck or spine, or in all three, as happened with Mrs Armstrong.
She was having problems seeing but her eyesight would be fine by the time she made it to the doctor’s office.
“I would do this repeatedly,” she said. “It was the same with my bladder — everything would disappear by the time I got to the doctor.
“I also kept falling all the time despite wearing flat shoes and sensible things.”
She was thrilled once her problems were finally diagnosed. With everything falling apart, “I was thinking I’d got a brain tumour”, she said. “There is no way to predict when or even if attacks will reoccur. Patients with MS can go into remission and not experience symptoms and function normally for long periods of time. Others continually experience symptoms in varying degrees.
“MS affects people so differently it’s hard to make generalisations. No two patients are the same. Now I know that I have to plan my days accordingly. I’m very grateful that I’ve got friends and family that understand I will have two weeks when I can’t move.”
MS Society of Bermuda committee member, Stanley Ingham, said it was not uncommon for people to have symptoms for some time before the disease was diagnosed.
Mrs Armstrong agreed: “Obtaining a diagnosis of MS is difficult — one can go years without getting a definitive diagnosis. Success of a diagnosis is highly dependent on the doctor’s skill in observing and obtaining an accurate history of the patient.
“A spinal tap is one of the first tests done. Fluid is taken from the spine and the fluid is tested for immunoglobulin G. If there is a high presence, this would suggest the presence of an autoimmune issue. Unfortunately, increased IgG can be seen in other diseases as lupus, meningitis and Guillain-Barre syndrome. An MRI is another tool used to diagnose MS as it can detect the presence of lesions, the spots where the myelin has eroded.”
Extreme fatigue is one of the most difficult and common symptoms and the most difficult for non-sufferers to understand, Mr Ingham said.
“All of a sudden the tank’s empty and they don’t know when it will be topped up. Normal people rest and go on but they don’t know when they’ll feel better.”
Treatment can be expensive. The Society spends between $15,000 and $17,000 each year supporting members’ medical costs.
Mrs Armstrong said: “MS is treated with approved drugs which can provide relief for acute attacks [ie steroids] and ones which can reduce the frequency and severity of attacks and slow the progression of the disease [known as the ABC drugs]. Muscle relaxers help in reducing spasms and other medications help combat depression, fatigue and bladder problems. Some of the most prescribed ABC drugs — Avonex, Betaseron, Copaxone and Rebif — are interferon beta drugs taken in the form of regular shots.
“A drug called Gilenya in now available in pill form. The MS Society of Bermuda pays for 15 per cent of members’ MS-related drugs. The drugs can cost up to $2,900 per month.”
The MS Society of Bermuda Medical Symposium is on Saturday and Sunday at Elbow Beach Hotel from 9.30am-3pm. Saturday is geared towards medical professionals, while Sunday’s event is open to the general public.
The event has been organised through the auspices of the National MS Society. Funds were raised by a Bermuda team led by Ashley Godek, Victoria Fiddick and Michelle Ingham, at last year’s Philadelphia Marathon.
Admission is free. RSVP by tomorrow at email@example.com or 293-0772.
• For more information visit www.mssociety.bm. The MS Society of Bermuda meets on the first Monday of every month at 6.30pm in the hall at Christ Church, Warwick. Family members are encouraged to come if the person with MS is unable.